7.29.2016

Today! Now! Give the IACC Your Feedback on US Autism Research Priorities!

Today is the last day for Americans to submit feedback to the IACC! Please let them know your autism research priorities. Why should you spend 30 minutes filling out this survey? Listen to Matt Carey, parent of an autistic child and a former IACC member:

"The IACC (Interagency Autism Coordinating Committee) is revising the
Strategic Plan for autism research. This is THE document that they
produce that can influence how autism research money is allocated.

Do you need something from autism research (almost certainly the
answer is yes). Let the Committee know what specifically you want. Do
you want better services and educational plans for minimally verbal
students? Better job supports for adults (adults who have high support
needs or “just” significant support needs)? Let them know.

And if you need a cheat sheet, I have provided my own answers to the questions, below. Feel free to use my opinions as resources (but please do not copy my answers directly -- that would invalidate both our responses).

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Question 1: When Should I Be Concerned? (Diagnosis and Screening

Please
identify what you consider the most important priorities and gaps in
research, services, and policy for Question 1. Topics include: diagnosis
and screening tools, early signs, symptoms, and biomarkers,
identification of subgroups, disparities in diagnosis.

We need the re-proportion our focus (and research into and policy funding) into better diagnostic tools to find and identify autistic people of all needs, races, cultures, and genders. That means deeper investigation into and better understanding of autistic traits including but not limited to sensory issues, motor issues, learning styles, communication issues (including early access and support for diverse alternative and augmentative communication methods), and how to accommodate individual variations on those needs.

Question 2: How can I understand what is happening? (Biology of ASD)

Please
identify what you consider the most important research priorities,
policy issues and gaps for Question 2. Topics include: molecular biology
and neuroscience, developmental biology, cognitive and behavioral
biology, genetic syndromes related to ASD, sex differences, immune and
metabolic aspects, and co-occurring conditions in ASD.

Research into understanding co-occurring conditions is crucial, as is promoting the understanding that treating co-occurring conditions is *not* treating autism.

Understanding the mechanisms by which autism manifests is important -- but it is not nearly as important as ensuring that existing autistic people get the supports and accommodations they need.

The emphasis and funding of research, proportionately, needs to shift to reflect real and desperately pressing needs: What are the underlying neurological, genetic, cognitive, and/or developmental reasons some autistic people are non-speaking? Why is it that autistic developmental trajectories are so different from non-autistic arcs, and how can we ensure supports reflect that often explosively punctuated developmental progress? Why are the mechanisms behind visual and auditory processing difficulties, and why do they get mistaken for behavioral difficulties? etc.

Question 3: What Caused This to Happen and Can It Be Prevented? (Risk Factors)

Please
identify what you consider the most important research priorities,
policy issues, and gaps for Question 3. Topics include: genetic and
environmental risk factor

While causation is a legitimate pursuit from the perspective of scientific curiosity and identifying best supports, the framing of this question has worrying eugenicist implications.

Autistic people have always been part of our communities, and inheritance/constellation traits in the family tree are insufficiently emphasized in the research and education materials. Overemphasis on causation in research also directly underlies under-emphasis on areas that benefit existing autistic people.

In addition, there is very little legitimate research (and much questionable or outright fraudulent) research in the causation area, so we need more rigor in evaluating such studies.

Question 4. How can I understand what is happening? (Treatments and Interventions)

Please
identify what you consider the most important priorities and gaps in
research, services and policy for Question 4. Topics include:
behavioral, medical/pharmacologic, educational, technology-based, and
complementary/integrative interventions.

Pharmacologic: We need more and more differentiated research in this area: Which drugs actually help autistic people, and why? Anecdotal evidence from medical professionals, autistic people, and families alike suggest autistic people have greater incidences of atypical and paradoxical reactions to many medications -- why is this, and what are alternative approaches? Does medical marijuana has legitimate applications, and why? What are the mechanisms?

Behavioral: we need better accountability among behavior professionals. Autistic people, their loved ones, and their supporters have long questioned and outright criticized behavioral practices that focus on "normalizing" autistic people -- sometimes through traumatizing means -- due to refusal understand or accommodate autistic processing, sensory, learning, and motor traits. Autistic people need better options.

Educational: Autistic students deserve educational approaches that truly reflect autistic learning styles. We also need to emphasize the difference that simple accommodations can make for autistic students in classroom settings: Providing noise-canceling headphones, respecting the need for breaks, ensuring available quiet spaces or break rooms, allowing students to move, fidget, or "stim" as needed.

Technology: We need a revolution in investigating and developing communication options for autistic people of all abilities, especially those with motor challenges and/or minimal speech. The current options are too limited and have too many hurdles to effective adoption (outdated technology, expense, user-unfriendly interfaces, etc.).

Question 5. Where can I turn for services? (Services)

Please
identify what you consider the most important services research,
delivery, and policy priorities and gaps for Question 5. Topics
include: service access and utilization, service systems, education,
family well-being, efficacious and cost-effective service delivery,
health and safety issues affecting children, and community inclusion.

We need better streamlining and public messaging regarding services. Too many families are not aware of available options, especially in traditionally under-supported communities. This extends to which children (and adults) are diagnosed in the first place.

Overall, the emphasis on all of these services must center on understand how autistic people think, feel, and perceive the world. No amount of research or effort will be useful if it is based on bashing a square peg into a round hole. It makes no sense to focus on wandering, for instance, without understanding the legitimate reasons why an autistic person might feel compelled to leave an area -- including normalization-based mistreatment, sensory issues such as noise or smells, hunger, need for intense activity, boredom, etc.

Question 6. What does the future hold, particularly for adults? (Lifespan Issues)

Please
identify what you consider the most important priorities and gaps in
research, services, and policy issues, relevant to Question 6. Topics
include: health and quality of life across the lifespan, aging,
transition, andadult services, including education, vocational training,
employment, housing, financial planning and community integration.

We need more research into these areas. Period. We need the proportion of research to reflect the real need in these areas.

With regards to housing, we need to ensure that options like supported decision making are emphasized, and that autistic people live in, and are not segregated from, our communities -- while still getting the supports they need and deserve, regardless of level of need.

The lack of available, affordable, accessible, and appropriate long-term housing for autistic people of all abilities needs addressing immediately, and on a national scale.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please
identify what you consider the most important research priorities,
policy issues and gaps for Question 7. Topics include: research
infrastructure needs, ASD surveillance research, research workforce
development, dissemination of research information, and strengthening
collaboration.

The top priority should be collaboration with autistic people of all abilities (including those who communicate using AAC) to establish the most useful research directions, policy issues, and gaps. In term of representation of abilities: due to the inherited nature of autism, many autistic people who would be able to collaborate also have children, siblings, spouses, and other relatives whose autistic traits vary from their own. These individual and families are a rich and underused research and policy resource.